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Paying Attention to Genomics Research and its Relevance to Native Hawaiians and Pacific Islanders Communities

Our DNA is worth a lot more than we think. It represents a valuable natural resource, much like oil and cobalt, that holds great potential for scientific advancement and breakthroughs in medicine. Currently, a person’s complete set of DNA and their genomic information can be easily generated and has become remarkably accessible and affordable. Coupled with the widespread availability of tools to analyze genetic data, this advancement has brought both promise and concerns regarding data mining, data as a resource, and the effects of its commodification on Native Hawaiian and Pacific Islander communities. Concerns raised and lessons learned among other indigenous groups, Native Americans, Alaska Natives, and Maori demand that we pay attention.

The Ola HAWAII Community Engagement Core (CEC) has been working in collaboration with staff from the Queen’s Cancer Biobank and the Queen’s Genomics Institute, and colleagues on the continent to investigate issues surrounding genomic information and its potential effects, including harms, on Native Hawaiian and Pacific Islander communities. Specifically, we have been discussing the impact of genetic testing companies like 23andMe, and, which have sold biospecimens collected from the kits, making available Indigenous DNA without the knowledge or consent of their participants. This practice raises concerns about privacy and the commercialization of genetic information, including the granting of intellectual property rights. The CEC members are committed to facilitating more organic conversations about genomics research with communities affected and ensuring their voices are heard in the various spaces.

Community education and awareness are critical to expanding the conversation about genetic data stewardship beyond the academic walls. Dr. Emmett Aluli and CEC Director, JoAnn Tsark partnered with geneticists, Dr. Leah Wang and Dr. Keolu Fox to provide a three-part series webinar covering (1) Hawaiian Genomics 101, (2) Ancient Genomics, and (3) Current Genomics. Recently, Malialani Kanaiʻaupuni from The Queen’s Genomics Institute at The Queen’s Medical Center developed a 10-minute culturally-tailored video, “Haku ʻŌewe: Braiding Indigenous Knowledge into Genetic Futures for the Health of Hawaiʻi and Beyond” to raise community awareness and use in a research study. She also field-tested in the rural fishing village, Miloliʻi, with community members, JABSOM students, and UH Hilo Pharmacy School students. 

Discussions must continue and inform policy that protects and promotes data sovereignty. Our approach towards health equity is guided by a set of critical questions: What happens to the data? Who is authorized to access the data and under what circumstances? How is that information being commodified? What are the tangible benefits to donors and their communities? Only through collaborative efforts and a commitment to ethical principles can we ensure that genomic advancements serve the interests of all, without further marginalizing our Native Hawaiians, and Pacific Islander populations.

For further insights into genomics research, refer to Keolu Fox’s presentation titled “Disrupting the Indigenous DNA Supply Chain.”

Fox, K. (2020). The illusion of Inclusion — the “All of Us” Research Program and Indigenous Peoples’ DNA. New England Journal of Medicine, 383(5), 411–413.

May Rose Dela Cruz, DrPH, MPH

May Rose Dela Cruz, DrPH, MPH

Director of Health Equity & Research
Kathleen Corpuz

Kathleen Corpuz

Program Manager on Community-Based Research
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